Wednesday, December 8, 2010

So Joey was supposed to have his head MRI the day after Thanksgiving. In retrospect, that probably wasn't the best day to schedule one of these sorts of things... I mean, who really wants to get up at 5:30 after a long evening of turkey, wine, and football?

Since he's so small, they have to sedate him for the 1/2 hour procedure so that he doesn't move, and since they're going to sedate him, he can't eat for 6 hours or so before the procedure! So we always try to schedule them first thing in the morning so he can (hopefully) sleep most of those 6 hours. He also has to wake up and start eating normally before being released, and with Joey, it's still a better idea to give him time. If he wants an extra few hours, I'd rather give it to him than require a silly overnight stay just because his recovery extends beyond business hours. Normally, I'd be anxious about my 6-month old needing general anesthesia, but Joey's already been-there-done-that. He does general like a champ! Asleep. Awake. Asleep. Awake. He's got it down pat. It wasn't really until the morning of that I started get a tad nervous.

Kate took him in, while I went to work, and the girls' grandmother stayed with them. Unfortunately, Joey had a cold that was bad enough that the anesthesiologist didn't want to put him under, so we had to reschedule. If he's not deeply asleep enough that he can still cough, the coughing would mess up the MRI, and if he is asleep such that he wouldn't cough, the phlegm could block his airway and turn into a bad situation very quickly. So we're on "wait" again!

His cold hasn't gone anywhere. Last night he wasn't able to keep any milk down, and we were thinking, "Just great...the last thing he needs is to be admitted for an IV drip!" But overnight, we use a thicker formula to help his reflux and he kept all of that down. So we'll probably keep up with that today to help little Rocky get better. hmmm...these posts are decidedly less shocking now that he's home and doing so well. It's okay...I'll trade his health for a more boring blog any day!

You might be wondering why he needs a brain MRI. Back when he was in the hospital for the first time, and on the ECMO (life-support) system, he positioned himself squarely with two problems that were opposite of each other.

On the one hand, ECMO requires the drug Heparin, which is a blood thinner, to keep clots from forming in the system. Blood clots form more easily on the plastic tubes that make up ECMO, and a clot has the potential for being injected right into his heart where the ECMO deposited the blood. Blood clots are not good things, and the doctors wanted to avoid them at all costs! In fact, they found a clot attached to the wall in the tubing that deposited the blood back into Joey. They had the surgeon come up and replace that section of tube. Since it happened once, they were hyper-vigilant about preventing another.

On the other hand, he had a small bleed in his brain. On the scale of 1-5, it was a 2, and typically those don't require any intervention--they just wait for it to heal. Unfortunately, when you want bleeding to stop, blood thinners work are no the best option... So his bleed lasted 3 or 4 days, which is longer than it typically would have. They also weaned him off the ECMO sooner than they typically do. The weaning wasn't unsafe...he did very well with it, and they would have left him on longer if he needed it, but typically they like to let them rest after a procedure for a couple of days to heal before starting to put more demands on his heart.

Obviously, at the time, getting his heart to support himself was the important goal. The bleed wasn't desireable, but there wasn't much they could do. They did a CAT scan on him, and it looked like there were some areas that suffered a lack of oxygen (a stroke) for a brief time, but the extent of it can't be determined without a MRI. So we've known he's going to need one for a while now. Also with the ECMO tube being replaced, he had reduced blood flow for the seconds it took to stop the machine, take the one tube out, put the other one in, and restart it. And then with his heart going into a non-pumping rythm during his second cath, there were a few seconds without oxygen before they started CPR. (Since there were a multitude of doctors and nurses in the cath lab, I doubt it was long before someone started compressions! They told us that the blood flow was virtually continuous. And since they had a monitor on, they could tell how hard the compressions had to be in order to produce correct blood pressures... Ah...the upsides!)

So he has a potential for brain injury, but we don't know yet. There's not really any intervention that we'll be able to do, even when we do find out, so that's why we haven't been in a rush. That and the fact that he needed another major surgery last month. That sort of preoccupied us. We have met with a neurologist already, and he was very optomistic. He used the analogy of the brain as a book, and a stroke tears pages from it. In Joey's case, it was likely minor, and he was so young that the pages were likely still blank. The brain has a miraculous way of adapting and if there is an area that's torn out, it would likely store the information that should have been there somewhere else. (The real damage from strokes that you see in older people is when pages get torn out that have memories on them. Then the brain must re-learn that info, which is sometimes impossible.)

He's doing great as far as we can tell, however. He's a little behind the curve developmentally, but he spent 7 weeks of his life asleep on tubes...I don't expect him to be average. He's working on sitting up now, and is getting stronger all the time. Yesterday, he rolled over for the first time. So, at end 0f this post, instead of with doom-and-gloom, you should leave with a happiness that he is still progressing nicely; he's a good little boy. And as we sit in Advent preparing hopefully for Christmas, we prepare hopefully for Joey's life ahead: not a perfect boy, but a wonderful gift that we're lucky to have.

Friday, October 22, 2010

It's amazing how spoiled the hospital makes Joey. Before his Cath last month, Joey was sleeping through the night. Kate would stay up a bit late and give him a bottle at 11 or so, and then I'd get up a little early to go to work at 4:30, and feed him then, and he'd sleep until 7 or 8. So through the night being 5.5 hrs, but since we could trade off, it worked. And then he went back to the hospital.

It was an odd stay because he was definitely alert and looking normal, with only an occasional weird cardiac rhythm. And he learned that, at any time, especially at night, he could fuss and get a nurse to come coo at him, rock him, and attend to his every need.

Spoiled boy.

After we got home from the Cath, but before the VSD repair, he added a 1:30 AM feeding to his arsenal... So there went sleeping through the night. We'd trade off nights, and survived. And then he went back to the hospital.

This was also an odd stay, because he did so well so quickly. He was extubated Friday (not 36 hours after the surgery), and in order to extubate, he needs to be alert, so he was already off of the sedation drugs. Normal post-op procedures required that he stay a minimum of 6 days, while he was weaned 0ff of any support by Sunday. So again, he learned that his own slave nurse would come and coddle him, coo at him, feed him, and rock him at his beck and call.

Double spoiled boy.

He has yet to sleep for more than 1.5 hours at a time when not being held.

Thursday, October 21, 2010

It was a beautiful, albeit surreal, experience leaving the hospital with our Joey on Sunday Wednesday. (Kate hasn't been sleeping too much recently...)

After the drama surrounding his cardiac cath in early September, we were mentally prepared for the long haul this time. Apparently, however, Joey had yet another surprise for us. To quote Fr. Mick, "Rocky vs. Heart Condition? 5-0 ROCKY!" Open-heart surgery ends up being his shortest stay yet.Walking out the past 2 times has been "See yall soon" parting. This time we hope to drop in after a clinic visit, but a long time before he requires their care. As we walked out there were a lot of hugs and cheek-kissing (for Joey, of course! Who can resist those cheeks!?)

It is a beautiful gift to have formed such good relationships with Joey's healthcare team. We LOVE our Children's Cardiac Heroes!

Monday, October 18, 2010

Joey is busy doing, well - nothing :) He is hanging out in the step-down unit, called "HKU" among other old friends. We love the nurses here, too, and they are all amazed at how big our little boy has gotten and how great he looks!

No more oxygen through the nasal tube, he's breathing room air and loving it. Much better than trying to scratch out the cannula anyway. This is a huge test, as his lungs are a little hazy on x-ray, meaning there is still some fluid there. With the increased movement, coughing, and Lasix the hope is this will quickly decrease. Also, he's receiving respiratory therapy (RT) for "chest PT" to help his move that fluid and keep coughing. He actually likes the cupping pounding on his back. I told him some people pay big money for specialty massage like that!

His cheeks are so rosy! With that VSD (hole) closed, the blood is now circulating the way it should, delivering oxygen-rich blood to his body, and he has the beautiful pink color to prove it.

His incision is healing nicely, although the wound-care will continue. Also, for the next several weeks we will have to be extra careful with his chest, including how we bath him, how we position him, and how we pick him up. That sternum (breastbone) needs some time to heal.

Oh can that boy eat! Well, he didn't grow those cheeks by passing up meals, that's for sure. The nurses still laugh that the fact that we worked so hard to get him to take a full 2 ounces of milk just 2 months ago. Tonight he just ate 9 ounces in 4 hours time. Yup. He's serious about this food!

SPOILED BOY! He loves having all these nurses at his beck and call. Which he does, often. :) And they love it.

Tuesday morning they will look at another chest xray, more labs for blood count and electrolytes, see how his pain meds are working. He will also have an echo done to take a look at all the repairs and measure pressures in various parts of his heart. This gives an objective reading of how his heart is responding to the repair, as it basically is a change in anatomy. The heart, including that darn valve, has to adjust to the corrected blood flow.

If all this goes well we could be looking toward to front door as early as Wednesday! Keep up those prayers, it would be GREAT to be home in such a short time!

Sunday, October 17, 2010

So Joey did well overnight, and they're going to move him to the stepdown unit today! Woo Hoo! There are a certain number of things that have to happen to move to the stepdown unit: can't be on a respirator, or high-flow breating, he can't need an arterial line, can't have a wound drainage tube or catheter, etc. He was already doing well enough to "qualify for" the stepdown unit when I got back to the hospital yesterday, but they try not to move them before 72 hrs. post-op.

Saturday, October 16, 2010

Joey's doing well! They removed his chest drainage tubes, along with all cardiac medication, and he's handling it amazingly well! He's gradually getting more and more tubes and monitors removed, and is handling them all in stride. Gram is holding him now, and he just polished off a bottle.

If all goes well, he'll be transferred to the stepdown floor in HKU tomorrow, which is the soonest he's eligible. (Although the charge nurse said that he's doing so well that if they needed a bed, he'd be the first to go!)

Friday, October 15, 2010

Joey's breathing on his own again! We're at home, so we just heard over the phone from the nurse, but he'll begin eating again soon, and that should make him very happy! He still has the weird rhythm, but they hope it will go away on its own in a couple of days. He'll continue weaning off of the cardiac medications, although he'll continue using the pain meds for the foreseeable future. We're still very excited!!

Joey continues to do well, and has surprised us with a few things overnight and this morning. I mentioned that arrhythmias are fairly common after heart surgery with bypass, and yesterday we found out that he had a brief run and then brought himself out of it right after surgery with no intervention. Last night he was having too much fun (he must have been playing soccer in his sleep) and his heart went back into this arrhythmia. The good news is that his heart got over it before, so it is likely to do the same thing again, hopefully within a few days. The other good news is that there are still pacing wires going into his heart left from the surgery (intentionally, of course!) and they can "pace him out of it." This means that although the monitor looks a little funky, Joey is not in danger from this rhythm. If it persists there is the possibility that it could compromise his blood pressure, but right now the doctors are not too concerned about that.

The other topic of interest in the question of when to extubate, or remove his breathing tube and take him off the ventilator. They changed his sedation medication to one that does not dope him up quite so much, but he's been breathing over the vent for several hours anyway! The process is to wait until the medications are flushed from his system, usually about an hour, and he starts to wake up a little more.

Ironic: Last night they had to constantly give him bolus medication because he was not as sedated and was getting feisty. He kept waking up and moving his head, which is not a great idea as it can cause swelling around the breathing tube. This morning they're ready for him to wake up and he's sleeping happily.

So as they were talking about beginning the "Extubation Readiness Test" (ERT) the doctor looked over and noticed that the attending doc had already switched the vent settings, and that Joey was breathing on his own! (He is still, and will remain for right now, intubated on the vent.) What this showed us is that he's ready as soon as we are. For the next couple of hours they will keep him on the ventilator to help him flush out those meds, and check his blood gases to make sure his heart is happy with this situation.

Patrick and I are probably going to use this opportunity to go see our girls at home. Joey is stable and sleeping with a nurse all to himself, a time when we don't need to be right at his bedside and are striving for balance between life at the hospital and life continuing at home.

Joey's Goals for today: watch that heartbeat - hopefully his blood pressure will stay stable and he's able to come off some of the heart medications. Watch the breathing - if he keeps taking those deep beautiful breaths we can take the breathing tube out this afternoon! Those, at least, are our goals for Joey. We'll see what he has to say about that.

Wednesday, October 13, 2010

And there is it, folks. I think *hope* you can read the different labels. This is a very simplified drawing to give a basic idea of Joey's different defects.

Today's Surgery was to close the ginormous VSD ("hole") right there in the center. They took a patch to cover the hole, using a synthetic material. Dr. Sinha then removed the PA band to open up his pulmonary artery (PA). This could have, but did not require a graft to help keep it open.

The surgery was full of potential serious complications, including dangerous rhythms requiring artificial pacing if the stitching ticked off the electrical circuit, but when they started Joey's heart back up it went into a nice sinus rhythm the way it should. Other than the obvious risks with the bypass itself, this was the most serious lasting risk, and so far Joey has avoided it!

Also, when the hole is closed it forces the heart to accept higher pressures, which can compromise his aortic valve function. Remember that aortic valve and how much we love it? They were able to get a really good look (I mean, they were right inside there after all) and verified that the stenosis is significant and it is leaky. We will deal with that later. For right now it seems to be tolerating the pressure changes well!

The next 24-48 hours are still very touchy for our Little Rocky. Mostly thanks to that valve his heart has quite an adjustment to make. Also, the dangerous tachycardia could surface anytime in the next few days. For right now we are THRILLED and so so thankful that Joey came through the surgery and all necessary interventions were successful!!!

While Joey was in surgery and we had several hours to spend, we were able to donate blood here at CNMC and also attend Mass. God is so good, the timing was perfect and the Graces were flowing. St. Callistus, I have never thought about you before, but I am thanking you on your feast day now!

Sunday, October 10, 2010

This past Friday was Joey's follow-up with the otolaryngologist. You know, the Ear, Nose, and Throat guy. Anyone who's been near him in the past 2 months knows his voice is back nice and strong, but now we have the official doctor's report stating as such.

The Doc was wonderful, and the first thing he said when he walked in the room was "WOW! Look at that Chubby cardiac kid! He looks fantastic!"

And then, he poked a little camera through Joey's nose and down to see his vocal cords. It sounds terrible, but it only lasts a quick second. And Dr. Shah declared them completely, 100% perfectly healed.

Quote of the day: "I am AMAZED at how fast they came back! Just amazed." ~Dr. Shah

Thursday, September 23, 2010

Joey is doing fantastic at home! Looking at him and his big beautiful eyes you would never believe all that little boy has been through. He is smiley, chubby, and pink - all wonderfully surprising things for a little boy with his heart. The doctor continues to be impressed with our little Rocky.Weighing in at 12 lbs 13 ozs could have something to do with it, too. He is gaining weight so fast! He does love to eat.The pressure measured around his aortic valve is excellent! The balloon, despite the drama afterward, was successful. The pressure across his pulmonary artery (PA) band is definitely high enough to warrant the surgery - so he's ready! Joey is lined up to have his hole closed up on October 14th! Let's patch this thing up! I will post more about the details of the actual surgery at a later time.

Thursday, September 9, 2010

So, after Joey's sleep study the pulmonologist/ sleep specialist thinks it might be /could be / maybe hopefully reflux. Yup, maybe we've been hanging out on a cardiac unit after my baby was saved on Thursday worrying about arrhythmias because he has acid reflux. I love it. That would be an easy fix!

Another avenue they're looking into is from a neurological aspect - is he having subtle brain disturbances, like seizures. Right now as I type Joey is sleeping happily with 26 electrodes glued to his head. There's a net-stocking covering the wires so he doesn't pull at them, so he looks like those long stocking-cap skiing hats. Or maybe an elf. He's awfully cute, either way.

Still, they're not sure yet. There are so many possibilities that we're just hoping for a clear answer to go home. Today is 1 whole week that we've been here!

Pat's Thought: "Only my son would require $30k worth of diagnoses to come up with reflux..."

Tuesday, September 7, 2010

... and sleeping? Joey is having a sleep study done today while he naps. In looking for answers to his bradycardia (normal beat but VERY slow rate) the doctors have lined up a couple of tests in an attempt to determine where these episodes are originating.

Today they have him all hooked up to watch his breathing while he sleeps. All babies (an adults for that matter) have normal brief apneic (not breathing) episodes. The real question is if there is a correlation between them and his heart slowing down. Tonight or tomorrow they may do a test to monitor brain-waves to see if there any any neurologic component like seizures. Really, they are just trying to cover all their bases.

The fact is that on Thursday he had a lot of electricity sent through his little heart for which we are eternally grateful. After such an event, however, it might have irritated his heart's normal electrical circuit, so we are waiting to see what they can do about it. In the meantime, we are not going anywhere. The doctors made it clear that this is not a new baseline, but rather something to be treated.

Happily, Joey looks great! It is ironic to watch him acting like his normal happy self even while the monitor is showing his heart acting-up. It is comforting, though, that he is eating well, interacting like normal, and I can still snuggle him. My Little Miracle!

Praying for wisdom and guidance for these wonderful docs in treating our Joey!

Sunday, September 5, 2010

... just in his own rhythm! Yesterday they moved Joey to the step-down unit, a very positive step towards the door! Last night, however, he started "skipping beats." While not uncommon after being defibrillated it is still not normal and may or may not lead to a problem for Joey.

Today the are monitoring him with 2 different cardiac monitors, and they switched his room to be closer to the ICU "just in case." They are waiting to ensure that all the cardiac meds he was on before are cleared from his system so as not to effect his heart rhythm and seeing if everything aligns by itself. Really, it's just a waiting game now. We know we're not going home today, but after that it depends what they are able to determine about Joey's little heartbeat.

Friday, September 3, 2010

Joey is doing so much better today, Praise God! He has really bounced back well in such a short time.

This morning they took out the breathing tube - off the ventilator again! He's breathing pretty well, although a little fast likely due to extra fluid leftover from yesterday. (To raise his blood pressure they had to give him extra fluid during the recusitation.) His eyes are open, looking around, stretching and wiggling like a good little baby!

One of his previous heart medications is no longer acceptable after his arrythmia, so today's big trial is another type of heart medication. So far he has tolerated it well, cardiac-wise, but they're still watching to make sure his heart doesn't start freaking-out again. No more of that, please.

If all goes well they will talk about moving him to the step-down unit possible as soon as tomorrow. :)

My little Chubby Cheeks is eating again, also, although he's taking it slow. It is very common for kids to be a little slow in picking up eating habits after all he's been through. He is happier at least having something in his belly, understandably!

Thursday, September 2, 2010

So we got here to Children's at about 7 this morning to a sea of smiles. Everyone thought Joey was looking good and expected him to have a relatively uneventful cardiac cath. We met our old doctor, Dr. Kanter, who did his first cath when it was a much more dangerous procedure. Everything looked good, and the only problem is that he was starting to get a little hungry.

We were allowed back into the cath room, where the put a mask over his face with anesthesia. After he fell asleep, we were able to kiss him quickly and then head out to the waiting room. The nurse came out after about an hour of an expected three-hour procedure. He was all smiles and said that everything was going well, and they were looking around. (Like Kate mentioned yesterday, they put little sensors up his arteries and veins to see size and pressure.) He was doing well and they were going to start ballooning soon.

About 40 minutes later, Dr. Su, who is an attending (boss) up in the CICU, came by. We knew her well from Joey's last stay in the CICU. She saw us in the waiting room and asked us what was wrong. We had no clue at this time, but Joey had coded. (In other words, his blood pressure dropped to 20/10, and they needed an immediate team of doctors to intervene.) She had gotten a page about a code in the cath lab and came down to see who it was--she was just as amazed as we were.

Not more than a minute or two later, the nurse came back in with a much more somber face, and said that Joey had ventricular fibrillation, which is a fatal heart rhythm, so they had to shock him (think the metal paddles on ER shows up against his chest with a loud "clear!", except baby sized...) and were performing CPR on him. He also said that they were preparing to put him on ECMO (that whole heart-lung bypass thing) again. As he mentioned that, we saw a few techs quickly wheeling the large machine into the unit. Soon thereafter, someone came running in with a red rubbermaid cooler, which is used to carry blood for transfusions or ECMO. Returning to ECMO would not be a good thing for Joey, since the last time he was on it, they had to ligate one of his jugular veins, so if they were to do it again, they would have to go in through his chest. So it would be a major procedure.

We were obviously shaken...I'm not sure anything anyone could have said would have taken us aback more. We were both crying and just trying to make sense of this "routine" balloon procedure and the fact that our baby was barely hanging onto life. We were blessed by the knowledge that the best doctors available were working on him, and everyone was quite reassuring.

The nurse came out to say that he had a normal rhythm again, but his heart was too slow... They put an external pacemaker in him, which means that the power source is outside of his body, with just a wire going in, and that was making his heart beat at a normal speed. They were going to hold off on the ECMO for the time being, but it was still serious. There were a few hugs, and he apologized for tearing up in front of us.

Part of the code team that is called for the cardiac cath is an emergency echo-cardiogram. (This is the ultrasound machine that gives pictures of his heart) Providentially enough, it was our usual cardiologist, Dr. Heath (who we love as well) who was on call. The ballooning had been really successful, and the pressure had dropped significantly. This was great news, because the balloon was a necessary procedure for Joey...there weren't any good alternatives. If it hadn't gone well, or if he had coded before the balloon, they would have waited a couple of days for him to stabilize and then done it again. None of us needed the stress of having to go through a second cath in just a few days...

Dr. Kanter came in and talked a bit with us, and assured us of a few things:

The vfib was directly caused by the ballooning procedure. There is no increased risk of the same thing happening, say, in 2 weeks when he's at home and his sister runs at him at full speed screaming... Likewise, there's little chance of it happening again here in the hospital.

It was likely caused either by the valve getting stuck open briefly, in which case the heart cannot push blood throughout the body, or by a small clot breaking off during the balloon and briefly blocking the cardiac artery.

Through medicine, CPR, and the pacemaker, his blood never stopped flowing, and the blood pressure only dropped to such a critical point for a few seconds. Because of this, he should have no permanent damage from the incident.

His heart was beating on its own. They weren't giving him any meds at all to help the beat and they were no longer using the pacemaker. He was stable.

He was going to be admitted to the CICU, where he'd be monitored for a while to make sure he was doing alright.

They took the cooler of blood back to the blood bank, and we both sighed in relief. No ECMO.

The social worker who we met last time we were here came running down to see how we were doing. We chatted about his condition with her until it was time for him to be wheeled up to the CICU. We followed the bed and got up to the third floor right at 12nn. Once a week, Thursdays at noon, they have mass in the "chapel" next to the CICU. We went in and had probably our most distracted mass without kids in ages...

Kate's dad was waiting in the waiting room when we got out of mass. He had come for his prior surgery and cath, but since this one was "routine", he skipped it. As soon as he got our text, he left work and made it down here quickly. We later chastised Joey...there had to be better ways to get his Papa to the hospital for the procedure.

So that brings us to now... He's in his room...looking very peaceful. He still has tons of lines and monitors going everywhere, but his heart is doing the work itself. Later they will wean him off of the ventilator and let him wake up. If he proceeds well with this, he might be discharged in just a few days.

So our priest, Fr. Kelly, who baptized Joey on the day he was admitted, has a nickname for him: Rocky. Joey just keeps fighting as much as he can. When we talked with Fr. Kelly today, he exclaimed, "Rocky did it again!" Which just about sums this whole thing up...

Saturday, August 28, 2010

... But not the fun kind, rather the ones that do something important!

The date for Joey's next procedure is this coming Thursday, September 2nd. He's the first case of the day, 8 am, so let's pray that the doctor is a morning person! Maybe I'll bring him a cup of coffee :)

Joey will be having another cardiac catherization with balloon dilation of the aortic valve. (*whew* say that 10 times fast.) He had this done once already, although the last time was much MUCH scarier. Last time the doctor was not sure he would survive, and statistically Joey beat the odds. This time Joey is healthier, stronger, bigger. He has had time to recover from his last surgery, time to grow, and his heart is returning to it's normal size and function. This is much safer this time around, praise God!

I will admit I am a little nervous; he's still my baby. My tiny little baby. I continue to pray for grace and strength, placing him in Bigger Hands. Please remember to keep him in your prayers this week!!!St. Joseph, pray for him!

Wednesday, August 25, 2010

Today was spent in the doctor's office. For 3 and a half hours. To be fair, I was a few minutes late thanks to traffic and poorly marked roads, but that's another story, and yall visit here to read about Joey and not about my inability to handle online map mistakes with grace and poise. Moving on.

Joey continues to keep us on our toes. Right about the time we start thinking we know what to expect he surprises us with a change. Today's, thankfully, was nothing significant.

The pressure across his pulmonary artery (PA) band was stable. Which is good news in that surgery is in the near future, but is not urgent. He is growing and his heart is working well and he will need that band taken off and that hole closed soon. But not right now. No, instead what changed over the past 3 weeks is the pressure across his aortic valve. His stenosis has progressed to the magic number at which he earns another trip to the cardiac catheterization lab. He will undergo his next balloon valvoplasty to loosen and stretch his aortic valve sometime in the next 2 weeks. (ish.) We will know the schedule sometime within the next week, and I will update as soon as possible asking for more prayers!In simpler news, he is growing nicely! Mr. Chubby Cheeks is up to 10 lbs, 6.5 ozs! He is alert and very smiley, loves watching his sisters and is a big fan of snuggling on my chest. I am meeting with another lactation consultant to try to encourage his to latch as he seems to have given up nursing in favor of the bottle. Any nursing mama will verify how heart-wrenching that is! We have another follow-up swallow study coming up soon, which I am confident will show that his vocal fold has healed and he's ready to eat regular thinned liquids.

Friday, August 13, 2010

Several follow-up appointments later and I'm finally getting around to summing it all up and writing again. My apologies.

Joey is doing really well these days, growing SO fast like the little Champ he is! Last week's weigh-in has him at 9lbs, 6 ozs! Go Joey, Go Joey....

At every follow-up he has an echocardiogram to examine each of his heart defects and monitor progress of his heart function. Measuring the pressure across his aortic valve will determine when he needs another cardiac catheterization with balloon valvoplasty. Measuring the pressure across the Pulmonary Artery Band helps determine when he will need the VSD (ventricular septal defect, or "hole") repaired. The last appointment showed that his aortic stenosis (measured by the pressure across his aortic valve) has stayed stable! The pressure has increased since his first balloon, but has not changed in 2 weeks. This is very good news, indeed. We are not going to schedule that intervention until the pressure is much higher, and the more time in between balloons the better.

What did change was the pressure across the PA (pulmonary artery) band. This is actually a pretty good sign, as it means he is growing well both in over-all size AND in heart function. His heart is growing to a normal size with greatly increased function. Therefore the likely next step will be to schedule the surgery to close the VSD and remove that PA band.

We are a little surprised by this, as the original time frame had Joseph waiting several more months before underg0ing this next surgery. However, he is healthy enough to take on this next challenge, so let's do it! I will post more about the details of the surgery when we have it scheduled, which we expect to do at this next cardio follow-up.

Tuesday, July 20, 2010

JOSEPH CRIES!!! The irony of this excitement is not lost on me, just so you know.

His voice has been slowly coming back in little cooing bits. At first I thought it might be wishful thinking; after all, the ENT warned me it could take months. But several days later and everyone is starting to look his way as he makes himself known! He still goes silent when he tries to scream, but I think I'm more than content with that development. :)

As a friend said, Who would have thought we'd be praying for a baby to cry!?!?!

Friday, July 16, 2010

We are allso happy to have our little Joey home! God's timing is beautiful, as Gram (Patrick's mom) was still in town to enjoy him at home and more time with the girls.

He had 2 obstacles to conquer, and I'm happy to report on both. On the nutritional front, he needed to keep eating! It's important for all little babies to stay well nourished and hydrated, but this is especially crucial after surgery! After surgery the body requires extra calories for repair and healing. Plus, the more weight he gains the stronger and healthier he is before his next surgery in a few months. The result: 2 full ounces gained in just 2 days! This is great!

The next challenge we face is his lack of voice. As I mentioned here he has no voice. How exactly does one manage caring for a baby that no one can hear? We've had several very creative suggestions, for which I am very thankful. In the high-tech department, we have a video monitoring system, which brings me great peace-of-mind. I can actually take a peek at his little chest rising and falling with each breath any time I want. My favorite solution for sleeping, though, was to tie bells around his ankles. He kicks when he starts to cry, so this means that I have a nice, simple, low-tech solution that allows me to sleep in peace.

The first night home we took shifts of being awake with him, but this could not last. The following night we took turns half-sleeping next to him. Finally, we felt confident enough that Kate slept on a mattress on the floor with him on the floor beside, bells around his ankles. This worked really well, and we're all starting to get some rest!

Monday, July 12, 2010

It feels like an eternity since we first brought our Little Man home from the hospital the first time, and here we are celebrating again!

The attending (i.e., "head doctor in charge") came in and told Patrick "He looks good. Looks like you're going home today. Congratulations." And Patrick called Kate and said "You should get the girls ready and leave now!" And Kate whispered to Bella "We get to get in the car... and drive to the hospital... and bring Daddy and Baby Joey HOME!!!!"And Bella threw her arms around Mama, then jumped down and ran around in circles laughing and singing "Joey's coming HOME!!!"And you never saw a happier parade than the one escorting our Precious Miracle out those hospital doors.

Saturday, July 10, 2010

Counting, counting, counting. Each and every ounce in weight and cc in food intake. For someone who really likes estimates and guesses, this has been a real change of mindset for me!

Yesterday Joey had a swallow study done to make sure his airway was safe while he eats. When vocal folds are weak they can sometimes fail to make that nice clean seal between the esophagus and trachea. The major risk, of course, is that liquid can slip down into the airway. Of course this is no good. Of course this is what we found out has been happening. It was clear from the images during the swallow study that his swallow mechanism works beautifully, which is great news. He can still eat. The bad news is he will have to stick to the bottle.

The Menu: Breastmilk fortified with a teaspoon of formula for the extra Calories, and thickened to a "nectar" consistency.

This was pretty emotional for Mama, who had successfully nursed him just before the test and was looking forward to reintroducing that into our schedule. Really, the laziness aspect of breastfeeding holds a strong appeal. However, this quickly paled in comparison to the excitement that he suddenly started EATING MORE! He is now at his goal for oral feeding!

Last night he had lost a little weight after a day of not eating. (The testing schedule had thrown off his regular eating for the afternoon.) Today he has maintained his weight, but not gained any. For normal babies this is a normal pattern, but for a tiny little post-surgical patient it is a little more crucial. He is eating enough to go home, but he MUST be steadily gaining weight.

Please PLEASE pray that he is ready to come home tomorrow!!! St. Joseph, pray for him!!!

Thursday, July 8, 2010

A full 10 days that he's been free from the breathing tube, and Joseph still has no voice. Well, not much of one anyways. His coo is like a soft gentle breeze whispering through a summer night, but his cry is, well, silent. His entire body will be screaming with a scrunched-up red face and back-arching and head-shaking, but his vocal chords haven't gotten the memo.

Today he saw an ENT (or should I say the ENT saw him? ) who gave us a good reason. The concerns were permanent damage to the vocal folds after being intubated, and also a potential lack of seal from the airway. The good news is that there is no immediate problem that could be compromising his eating or airway. The bad news is that his right vocal fold is loose, which means exactly what we're seeing - he's not making a lot of noise.

We will follow-up with the ENT over the next few months as an outpatient to monitor progress. He sees no reason why Joey won't be yelling with the rest and best of them, but it may take a few months. If there is still a problem in a year then we may have to intervene. Meanwhile, anyone have good suggestions for watching and protecting a baby who can't cry?

In the eating realm, Joey is still slow and steady. We decided that his jersey number is 22, since that's about what he eats (in mililiters/cc's) each time. Just this evening he managed a whole 25! Regardless, he is gaining weight beautifully. They will remove his NG tube tomorrow morning and see how he does!!! Please pray that he eats well and can leave it out!

Tuesday, July 6, 2010

Sorry for the lack of updates, but Joey is less sensational now-a-days. He's still healing like a champ, and his final inpatient hurdle is to master the art of eating. He still has an NG tube through his nose to his stomach (the orange one in the picture), and for Sunday and Monday, he began every other feeding with a bottle of fortified milk (to give the breastmilk more calories) followed up by the rest through the NG tube. This way, he gets the full amount every time, but he's encouraged to eat himself and expand his tummy. Today, the big breakthrough is that he starts every feeding with a bottle. Yeah, I know, not horribly exciting, but it is a step closer. It's hard to imagine that three weeks ago today, he had his first surgery and then decompensated almost to the point of death... A few more bottle feedings is hardly blog-worthy, but at the same time, I'm happy that it's not more "intereresting". :)

If all goes well today, and I think it did, then tomorrow they'll take out the NG tube, and assuming all goes well again, he'll be discharged Thursday or Friday. It's amazing that we have a timeline. They've been prepping us with discharge instructions and all that... wow.

Saturday, July 3, 2010

Joey continues to improve day by day. The nurses are starting to talk to us about care "when he goes home", so we're getting more and more excited! He's eating more and more at a time, and doing well with it. Bella's birthday is Monday, and it would be a wonderful present for her to go get her brother from the hospital!

Speaking of Bella and Anastasia, they visited Joey at the hospital last night. Both of them had really missed him over the last three weeks (which seems so long and so short at the same time.) Since Joey's on the step-down floor, he only has a feeding tube through his nose, an IV lead that's not connected in his wrist, and some EKG leads. We thought that it was a good time to bring them. They both loved seeing their brother!

Bella got to hold him as soon as we got there.

Anastasia was not one to miss out on the action!

They helped our nursing student change his EKG leads.

They both got an old lead/sticker

And to plug them into the machine.

Bella loves baseball (we're a Nationals family…so it's more about the playing than the winning. :) ) She picked his outfit and helped to dress him.

Friday, July 2, 2010

Eating is a major concern after surgery for almost everyone but especially for the little babies! The major goal for right now is EAT, Joey, Eat! Let's fatten you up and get you home!

There are special concerns after ECMO, since the cannulas sit against the mucles for the tongue and jaw, leaving possible problems with the "suck/swallow" reflex. Yesterday we got to try a bottle for the first time, and he did GREAT! NO problems whatsoever with the bottle (of breastmilk) and he seemed to really enjoy it, actually. The problem arose when it was all gone. Poor Little Guy, I hate that part, too. They are alternating bottle and bolus through the naso-gastric (NG) tube. All sustinance right now is fortified breastmilk for extra calories and protein.

Unfortunately, while he loved the eating part, his stomach did not like the being full part, and he has vomited almost everything that goes in. They are slowing down his bolus feeds, and we took last night off from bottle trials just to make things gentle and easy on him. As one of our favorite CICU docs said, "He's a little sensitive." When he can keep the food down we'll try feeding with the bottle again, and gradually increase that as tolerated.

The goal for going home (YES! I JUST USED THE PHRASE "GOING HOME!") is for Joey to tolerate full quantity from a bottle and breast. I will still most likely end up alternating fortified breastmilk and nursing for a little while.

Please pray his stomach settles down and he can EAT well! It's amazing to me that it's the biggest obstacle to bringing my baby home! All that he's been through, and I'm starting to finally imagine having him HOME again!

Wednesday, June 30, 2010

...stands for heart and kidney unit, where Joey now is. He's now out of the ICU!!! We're so excited about it, because he had to make significant progression to make it here. He now only has an NG tube for feeding and stick-on heart leads. It's amazing how empty his monitor is...only 4 lines instead of the 13 he had last week. (In fact, one of the four wasn't important enough back then so a full 10 monitors had been taken off!) He's breathing completely on his own -- no machine assist at all!

His next steps will be to continue weaning his meds, but most importantly remembering how to eat. It will be so awesome when he gets there. Obviously, he is still running the show, and everything is on his timeline, but he could potentially be released this weekend if everything goes stellarly. Saturday will be three full weeks on the inside; it would be nice to not have to extend it!

Tuesday, June 29, 2010

More positive news today! He was moved farther from the nurses station to a room technically on the same CICU unit, but housing spill-over patients in the next ward. Basically, in this sort of intensive care, the most serious cases are right next to the nurses station for extra monitoring, so the farther you get from it, the better off you are! The new room doesn't have as many connections different life-support devices, nor is it up to the level of sterility for impromptu surgeries (like putting the ECMO in or taking it out.) So by moving him, they're saying that they don't foresee needing to use those additional devices! I know it might seem like we're grasping at straws here, but every little milestone seems humongous!

One other perk of the new room is that it has somewhat more lax rules. It has a table in it that we had lunch on today (the unit technically doesn't allow food in the patient rooms, but the unit where the spill-over is does...we went with the lax rules. :)) It also has a full-size couch, which is marginally more comfortable than the floor, but should Kate decide to stay to help nurse the little guy, she'll actually be able to sleep in something more than a recliner. Also, being off the main corridor makes the room a bit quieter, and fewer people poke their heads in...all good signs!

Speaking of feeding the little guy, he ate 10 ml of breastmilk from a bottle today! This was great news! Newborns typically have a hard time learning how to eat after being fed through the IV or feeding tube for the majority of their lives. Also, being on ECMO stresses certain neck muscles (look where those canules are inserted, and you'll see how it messes with his neck/throat) so that makes it harder to remember how to suck. On the flip side, he had a week of nursing, so simply remembering how is easier than learning for the first time like those babies whisked directly from the delivery room the the ICU. So the fact that he ate from a bottle was awesome! A baby his size on full feeds gets about 18 ml/hour, so a baby that nurses every 4 hours would get roughly 72 ml per feeding. So it was a small portion: only 1/7 of the amount he needs before he can feed completely without the feeding tube, but it's a start. They'll work on stopping the feeds before he eats to help him get hungry and then offer more and more each time.

Monday, June 28, 2010

So yesterday, Sunday, they took a chest X-ray and it was cloudy. That means that his lungs are "moist" and have to work harder to exchange oxygen. Because of this, they upped his meds to make him pee more in order to "dry them out". They were already set to start doing some more invasive lung intervention today when it didn't work because it's been cloudy for almost a week now. However, when they x-rayed him this morning, it was miraculously all crystal clear! All of the medical staff were surprised and happy.

So, this afternoon, they tested him again, and then removed the breathing tube. He was great with it! He had to suffer through Roddick loosing in the 5th set without making a sound and wanted to cheer with his aunt the Brazilian blowout of Chile. It was removed during halftime and he was able to squeak cheers out for the 3rd goal. :)

They're not positive that he'll stay off the ventilator because his heart small, so that it still has to work hard to pump the blood. Time is the only medicine for that. Obviously, we hope that this doesn't happen, but even if it does, it doesn't mean that he's backsliding.

We're all happy here for this, and Bella and Anastasia were their usual hooligans during mass tonight. Thanks for the prayers and we look forward to the day when we have three kids at mass again!

We're honored to be in all y'all's thoughts and prayers,Pat, Kate, Bella, Anastasia, and Joey "Rocky" Tramma

Let me sum up...

When our Joseph Thomas was just 8 days old he was diagnosed with 3 major heart defects. He has faced multiple heart surgeries and life-threatening procedures, survived CPR, been on various forms of life support, lost and found his voice again, and defied statistical odds. The doctors called him "Rock Star" and our Priest-friend called him "Rocky." He will face more challenges and surgeries in the future, but we hope not for a while. This is our boy's story!